Sunday, February 23, 2014

Intersex Peoples' Health - What Do We (Not) Know?

Hi, everyone! I’m turning 30 this year, and that number is making me reflect on my lifestyle and my choices – and how they relate to my health. I feel like there’s this attitude (at least in the US) that your 20’s are for screwing around, having fun, not caring about all the important stuff you should actually be caring about. While I wasn’t much of a drinker, it’s always been difficult to turn down pizza, chocolate cake, and other delicious things to nosh on. I’ve had to fine-tune and adjust my tastebuds to crave delicious things that are actually HEALTHY for me, and limit the amount of stuff in my diet with lots of saturated fats, lots of sugar, lots and lots of salt (oh my god, how I LOVE salt…), etc.

I’ve also been thinking a lot more about my bone health. Bone health is something that I think about more than half of the population, since women are statistically more likely to have lower bone densities, and greater risk of osteoporosis and other forms of significant bone loss.

The thing is, though, even though I often identify as female in various senses, I’m not actually a typical female biologically. It’s all well and good to consider my bone health, but I likely have different needs than typical females.

And I don’t really know what those needs are.

Actually, no one really knows what those needs are.

I’ve posted previously about how frustrating it is that intersex people often have specific health needs that we know very little about, since there’s been very little attention and focus on these problems by doctors and in clinical research. Instead, the vast vast vast majority of medical studies on intersex people? Is how to more efficiently operate on us without our consent, to achieve a more “desirable outcome” in terms of how “normal” our genitals look, how much scarring is present, if we can feel (non-painful, or any) sensation. Medical research could really benefit intersex people by focusing on ACTUAL health concerns for intersex people – like medicine does already for biologically typical males and females.

The clinical focus on intersex people should be to help keep us HEALTHY (you know, as one expects from interactions with doctors and the medical community) instead of trying to police our bodies and “fix” us for reasons that don’t track our health.

Well, I’ve been thinking about my bones lately. Since I was 8, I’ve taken an estrogen pill every day. I would not have needed to take any hormone pills whatsoever if my gonads (specifically, testes) had not been removed at birth. This is because, although my body did not respond to any androgens (i.e., testosterone) my body produced, the body does this cool thing called “aromatizing”: basically, the hormone my body couldn’t use (testosterone) is chemically converted into a hormone my body CAN use – estrogen! So, even though my body actually PRODUCED testosterone, that testosterone would have been converted into estrogen, and I assumedly would have had a healthy level of estrogen in my body.

My testes were removed at birth, however, so I have to take an estrogen pill every day. More on this in a second.

My body would never have been able to respond to, or use, testosterone, so that would still have affected my bone health. Even though we associate testosterone and estrogen as “male” and “female” hormones, most people have some level of both of these hormones, and they play important roles in regulating a lot of basic process our body does. (They’re not just floating around in there, hormonally validating the fact that we’re male or female somehow.) Some of the basic processes testosterone and hormone regulate are bone growth, maintenance of bone density, and (usually when we’re older) bone loss.

So, what does bone health look like for someone who’s NEVER had one of the two important bone hormones at work in their body whatsoever?

The short answer is, I have no idea.

But it does make me worried, because what is going to happen to my bones as I age? How have my bones been seemingly okay so far in my life to BEGIN with?

There’s just not enough research out there to answer those questions.

So, the one question I have is: what happens to bones when a body doesn’t respond to testosterone, a major player in bone health?

My second questions is, will I need to take different doses of estrogen pills as I age?

As stated, I take an estrogen pill every day, to replace the estrogen my body isn’t making (specifically, aromatizing) because my gonads were removed shortly after birth. I have been taking the same dose of estrogen every day, but I have gone through periods where I 1) was lax about taking them because I was a pretty flighty teen and early adult, and 2) I was sometimes mad about my history of medicalization, or angry at the doctors who performed procedures on me without my consent that were traumatic, and in protest, I would refuse to take my pills. (This is ultimately not a good idea since I was literally only hurting myself at that point, but it was one of the few ways I could deal with and push back against my medical trauma at that point.)

I’ve been on the same dose level for a reaaaaaaaaaaally long time – since I was about 18, in fact. This might be appropriate because I haven’t reached old age yet, but when I get older, will I need to increase the dose of estrogen I take daily?

Again, short answer? I have no idea.

My general practitioner isn’t sure either, but we’re going to work together – and maybe with other specialists, if needed – to try and figure out what’s out there in the literature, and what I can do to best navigate my aging process.

It’s strange – most people have a roadmap, a very general idea of what aging is going to be like for them. Even if the reality of aging, as you experience it, deviates a lot from your assumptions of what aging will be like, there are some kinds of guidelines in place you can fall on for some basic information.

I don’t have such a roadmap, as an intersex person. I see the future as a big, swirling, cloudy blank. I don’t know what to expect. I don’t have any expectations.

But that does make me a little worried, because I want to be healthy. So it’s frustrating.

In a lot of ways, I feel like I did during my gross anatomy course, which formed the basis for my second Full Frontal Activism post. Looking at the reproductive system we had just dissected, and whose structures we identified, I didn’t see any bodies there that looked like mine, that represented me. I felt lonely. I felt invisible. I felt like, there are clearly other options for what bodies look like and can do out there, but that information isn’t in this room.

Except for me standing there, of course.

I don’t know what my aging process is going to look like. What I do know is that clinical studies on intersex peoples’ health are crucial and needed and important, and I hope that we start seeing more studies out there that address these concerns.

Any doctors who are interested in conducting research on intersex peoples’ health needs? Please contact me! I’d love to know about what kinds of studies are going on, and where research needs to go to investigate the questions relevant to us. Thanks!

1 comment:

  1. Oh, I typed up a storm a bit ago

    but if I were to simplify it

    without being shaded and jaded by my own reflections.

    Perhaps we need someone with a bit of social media skills *cough* to spread around the idea of creating an international database of IS related medical papers and other research

    in part for the great need of one stop shop for professionals and others alike

    ideally, of course, this would help better streamline our sociopolitical movements, research and treatment for our individual variations/conditions and support services as a whole.

    And of course, there's just also the realities of needing a more central database for watchdog groups ... as even in these more progressive times, many of our variations are still routinely scapegoated, sensationalized, hysterically maligned under a medical pretense for philosophical questions about society rather than IS health or mental health.

    But I'm a bit lacking to organize something myself... though I would likely donate and help promote a non profit fund to help pay for access to such reports and the hiring translators and a medical team together to translate them into english and others languages, and perhaps more importantly, translating them into layman's terms for the rest of us.

    and of course, that helping us, as place we can refer other medical professionals, like our general practitioners to more than google.

    hopefully, with the incentive of creating more personalized health plans for us as well as gaining/spreading more up to date knowledge about the research associated with our conditions... more options for our regular plans and more incentive to figure out what's related to being IS, if its the result of longterm treatment or if its truly unrelated.